Lyme Disease: How Do 30,000 Cases Jump to 300,000?

Oops. Guess there’s been a little miscounting when it comes to Lyme disease. It’s really 10 times more common than we thought. Not 30,000 cases a year, but 300,000, according to new research by the Centers for Disease Control and Prevention (CDC).

Kudos to the CDC for making this concerted effort to find out the complete scope of this insidious, tick-borne disease.

It comes, however, after years of controversy over Lyme, including patients complaining that doctors didn’t fully understand it, under- or mistreated it, and disregarded patient complaints of its lingering effects.

The traditional way the disease has been tracked is by doctors reporting diagnosed cases to state health departments, which then report the numbers to the CDC. But too often, the disease is never reported, and the agency realized it needed to look at different ways of tracking its spread.

So researchers surveyed laboratories that do Lyme testing, talked to patients across the country and reviewed insurance-claim information from 22 million people over six years. The results were presented Sunday at the 2013 International Conference on Lyme Borreliosis and Other Tick-Borne Diseases in Boston.

What the data confirms is that “Lyme disease is a tremendous public health problem in the United States, and clearly highlights the urgent need for prevention,” said Paul Mead, M.D., an infectious disease specialist who oversees the agency’s tracking of Lyme disease.

To which many sufferers of this disease might say, “It’s about damn time.”

Catherine Clarke Fox, 52, of Herndon, Va., who’s had two go-rounds with Lyme disease from tick bites she got while gardening, tells AARP that the CDC’s new statistics “are an incredibly important step” toward more in-depth research to both treat and prevent the disease.

She also warns that doctors, and their older patients, may dismiss the initial aches and fatigue of the disease as a normal part of aging.

“I got bitten shortly before turning 50, and I thought it was just age that was making me so tired and my legs hurt. And so did my doctor, so I didn’t press it, until one day I couldn’t walk up the stairs,” says Fox, who blogs about Lyme at LifeLoveLyme.

Lyme disease is named after Lyme, Conn., where it was first identified in 1975. It’s transmitted by infected ticks, each no bigger than a poppy seed, that bite humans, causing fever, headache, fatigue and usually – but not always – a telltale bull’s-eye rash.

Most cases occur in the Northeast – from upper New York state and Maine and south to Virginia – plus the upper Midwest. In areas where Lyme disease is prevalent, up to 30 percent of black-legged or deer ticks can be infected, which means people who go outdoors in grassy or wooded areas without adequate protection face a substantial risk.

Most people recover if treated with antibiotics within 72 hours of being bitten, but often people don’t realize they have the disease – up to 30 percent of people don’t get a rash – or that they need to be tested. If left untreated, the disease can spread to joints, the heart and the nervous system.

Although chronic Lyme disease had been discounted by many doctors, the CDC now recognizes it as a real problem, Mead told NPR. “The question is whether it’s due to persistent infection or some immunologic effect, and what’s the best way of treating it,” he said.

The best way to avoid getting a tick bite is by prevention: wearing insect repellent, covering skin with clothing and checking for ticks when you come back inside. Studies show that showering within two hours of being outside reduces the risk of infection, NPR reports. And in the shower, you can check for ticks in places like armpits, groin and scalp.

One thing in our favor, notes the CDC, is that the tick must be attached and suck our blood for 36 to 48 hours before the infection can be transmitted, which is why it’s so important to find and remove the little suckers (with tweezers!) before they have a chance to do real damage.